Nephrol Dial Transplant (2007) 22: 845–850
doi:10.1093/ndt/gfl700
Advance Access publication 12 December 2006
Original Article
Social support predicts survival in dialysis patients
Melissa S. Y. Thong1, Adrian A. Kaptein2, Raymond T. Krediet3, Elisabeth W. Boeschoten4 and
Friedo W. Dekker1, for the Netherlands Cooperative Study on the Adequacy of Dialysis
(NECOSAD) Study Group
1
Department of Clinical Epidemiology and 2Department of Medical Psychology, Leiden University Medical Centre, Leiden,
3
Department of Nephrology, Academic Medical Centre, University of Amsterdam, Amsterdam and 4Hans Mak Institute,
Naarden, The Netherlands
Abstract
Background. Social support is a consistent predictor of
survival, as evidenced in empirical studies in patients
with cancer or cardiovascular disease. In the area of
renal diseases, this topic has not yet been studied
extensively. This study, therefore, aimed to investigate
the association between social support and survival for
patients on dialysis.
Methods. Between December 1998 and January 2002,
528 incident haemodialysis (HD) and peritoneal
dialysis (PD) patients from multiple centres in
The Netherlands were consecutively recruited as part
of the NECOSAD-2 study. Patients completed the
Social Support List (SSL) at 3 months after the start
of dialysis. The SSL measured two aspects of social
support: interaction and discrepancy. Cox regression
analysis was used to estimate all-cause mortality risk
from baseline till censor date on 1 January 2005.
Results. Perceiving a discrepancy between expected and
received social support was associated with increased
mortality: social companionship (RRadj: 1.06, 95% CI:
1.00–1.13), daily emotional support (RRadj: 1.10, 95%
CI: 1.02–1.18), and total support (RRadj: 1.02, 95% CI:
1.00–1.04). This association was similar for PD and
HD patients. Social support (interaction) was not
associated with survival, neither in the whole sample
nor when stratified by therapy modality.
Conclusions. These results point to the importance of
psychosocial risk factors for mortality in patients on
dialysis. More efforts are needed to improve support
for these patients.
Keywords: dialysis; ESRD; mortality; social support
Correspondence and offprint requests to: Melissa Thong,
Department of Clinical Epidemiology, Leiden University Medical
Centre, PO Box 9600, 2300 RC Leiden, The Netherlands.
Email: S.Y.M.Thong@lumc.nl
ß The Author [2006]. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.
For Permissions, please email: journals.permissions@oxfordjournals.org
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Introduction
Mortality in dialysis patients is positively associated
with age, comorbidity, inflammation and a number
of other factors related to atherosclerosis [1–3].
As these factors are often non-modifiable,
research is also focusing on potential modifiable
psychosocial factors such as social support as possible
mediator for survival amongst dialysis patients.
Having access to social support, be it from the
spouse, family members, friends, colleagues or the
community, has been consistently linked to better
health outcomes for patients with various chronic
illnesses [4–6].
Compared with chronic illnesses like cancer
or cardiovascular disease, there is a paucity of
research addressing the association between social
support and mortality rates in dialysis patients.
A literature search in this area identified three
relevant studies, which all described an increased
risk of mortality with lower levels of social support
[7–9]. These associations could be mediated by
better dietary [10] and treatment [9,11] compliance,
and the promotion of a sense of well-being [7].
Interpretation of the results should be made with
caution as these studies are limited by small sample
size, focus mainly on haemodialysis (HD) or use
prevalent instead of incident patients.
Understanding how having social support at
the start of dialysis treatment is associated with
survival and well-being may have important
clinical benefits for this patient population as it
can inform clinical practice for the promotion
or improvement of patients’ support networks.
Using a large sample from the Netherlands
Co-operative Study on the Adequacy of Dialysis
(NECOSAD-2) [12,13], our study examined the
effect of social support at the commencement
of dialysis on survival rates amongst patients on
dialysis.
845
Subjects and method
Patients
Incident dialysis patients with informed consent were
consecutively recruited between December 1998 and
January 2002 from multiple centres as part of the
NECOSAD-2 study. Eligibility included being over
18 years of age, having had no previous history of renal
replacement therapy, and surviving the initial 3 months
of dialysis. This study was approved by all local
medical ethics committees.
Measurements
Data on demographics, underlying cause of kidney
failure, body mass index (BMI), serum albumin level,
residual renal function and comorbidity were collected
at baseline. The primary cause of kidney disease was
classified using the European Renal Association-
European Dialysis and Transplantation Association
codes. Residual renal function parameters included the
residual glomerular filtration rate (rGFR) (calculated
as the mean renal clearance of urine and creatinine
corrected for body surface), and the Kt/Vurea/week
(calculated as renal urea clearance corrected for the
urea distribution volume according to Watson et al.
[14]). Patients’ comorbidities were classified using the
3-point Davies score [15] which was determined by the
number and type of comorbid conditions present.
Nutritional status was measured with the 7-point
Subjective Global Assessment (SGA) scale [16].
Functional status of the patients was assessed by
dialysis staff using the Karnofsky scale [17]. Two items
from the Kidney Disease and Quality of Life Short
Form (KDQOL-SF) were used as depression indica-
tors: ‘Have you felt so down in the dumps that nothing
can cheer you up?’ and ‘Have you felt downhearted
and blue?’ [18]. Patients rated these two items on
a 6-point scale (1 ¼ all the time; 6 ¼ never). A score of

3 for any one of the two items was considered an
indication of depression.
Social support was assessed using the self-
administered Social Support List (SSL) [19], a validated
instrument that has been used with kidney transplant
patients [20] and other population samples [21,22].
Patients were given the SSL during their baseline visit
at 3 months from start of dialysis, with instructions
to return the filled questionnaire via pre-paid post
within a week. Thirty- four items from the SSL were
used as a measure of two aspects of social support:
‘Interaction’ (SSL-I) measures the frequency of social
support that the patient receives; and ‘Discrepancy’
(SSL-D) is the perceived difference in social support
between that which is desired and what is received by
the patient. Both SSL-I and SSL-D assess three types
of social support (Appendix 1): ‘social companionship’
measures the frequency of social activities such as
telephone calls, visits and invitations from friends
that patients received; ‘Daily emotional support’
M. S. Y. Thong et al.
pertains to shows of affection received; and
‘Emotional support with problems’ refers to acts of
motivation, encouragement, comfort, advice giving and/
or problem solving received. Patients rated items from
the three subscales using a 4-point scale (1 ¼ seldom/
never; 4 ¼ very often) on the frequency in which they
received social support (interaction). The sum of the
items in each subscale forms the subscale score. A total
support score is obtained by summing the three subscale
scores. High scores indicate that patients report receiv-
ing good social support. For the discrepancy score,
patients rated their perceived discrepancy between the
desired and received level of social support on a 4-point
scale (1 ¼ ‘I miss it; would like more’; 4 ¼ ‘Happens too
often; wish it was less’). Item-scores were recoded to
calculate the discrepancy in patients’ desired and actual
level of support received. Higher discrepancy scores
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suggest lower level of perceived support. The SSL has
good reliability, ranging from 0.81 to 0.91 for the
different aspects of social support in both the interaction
and discrepancy subscales [19]; in our study, the
Cronbach a for the various aspects of social support
in both subscales were between 0.82 and 0.94.
Statistical analyses
Cox proportional hazard models were used to deter-
mine the associations between social support and
mortality, with adjustments for demographics, comor-
bidity, serum albumin (as an indicator for chronic
inflammation or malnutrition), functional ability,
depressive symptoms and treatment modality.
Patients were followed till death or censor. Reasons
for censoring included loss to follow-up, transplanta-
tion or end of follow-up on 1 January 2005.
Significance levels were determined at P
0.05.
Results
Of the 606 eligible patients, 528 (87%) returned the
SSL as per instructions. Reasons for non-response
were poor health or being not fluent in Dutch. Patients
were followed up for an average of 910.8 days
(563.4 days). Mean sample age was 58.8 years
(14.3), with 59% male and 68% married or living
together (Table 1). Females, elderly (65 years), and
HD patients perceived having slightly better emotional
support with problems (5% higher score, i.e., 0.2SD),
but no differences on other social support dimensions
were observed. Baseline covariates such as age,
treatment modality, education level, employment,
primary cause of kidney disease, comorbidity,
SGA scores, serum albumin, Karnofsky scores, and
depression indicators were significantly associated
with mortality in univariate analyses.
A total of 189 patients died during follow-up. The
main cause of death was due to cardiovascular reasons
(23.6%).
Social support and survival 845
Table 1. Baseline characteristics and relative risk for mortality The effect of social support on mortality was similar
in HD when compared with peritoneal dialysis (PD)
Risk factors Total groupa RRb 95% CI patients. However, due to the smaller sample in
(n ¼ 528) (crude) each category following stratification, the confidence
intervals (CI) in both subgroups were slightly wider
Male (%) 59.1 1.176 0.877–1.577 (data not shown). Only daily emotional support
Age 58.8  14.3 1.052 1.039–1.065
Dialysis modality (%) (discrepancy) remained significant for HD patients
HD 65.0 1.836 1.317–2.559 after adjustments.
Ethnicity (%)
Caucasian 93.8 1.496 0.737–3.038
Education (%) Discussion
Low 57.4 1.523 1.120–2.072
Marital status (%)
Married 67.6 0.720 0.698–1.282 Our study, using a large sample of incident dialysis
Employed (%) patients, suggests that higher discrepancy between
No 76.7 3.605 2.090–6.217 received and expected level of types of social support
Primary cause of renal failure (%)
Diabetes mellitus 13.8 1.000 – such as social companionship, daily emotional support
Glomerulonephitis 12.9 0.189 0.095–0.378 and total support, was associated with higher mortal-

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Renal vascular disease 18.9 0.895 0.595–1.345 ity. These risks remained even after controlling for
Others 54.4 0.453 0.312–0.658 possible confounders such as age, gender, education
Davies comorbidity score (%)
Low 43.0 1.000 –
level, marital status, comorbidity, serum albumin level,
Medium 47.9 4.251 2.881–6.273 depression indicators, functional ability and treatment
High 9.1 6.690 4.109–10.892 modality.
c
SGA score (%) Social support affects health through behavioural,
5 or less 21.2 2.425 1.781–3.301 physiological and psychological mechanisms [23].
BMI 24.9  4.4 0.990 0.956–1.026
Serum albumin (g/l) 35.9  5.0 0.956 0.930–0.984 Provision of social support can be through emotional
Kt/Vurea/week 3.1  1.0 1.056 0.926–1.204 means, tangible efforts, information sharing or advice
rGFR (ml/min/1.73 m2) 4.0  2.9 0.957 0.901–1.016 giving.
Karnofsky index 80.2  14.6 0.960 0.952–0.968 The disease characteristics of end-stage renal disease
Indication of depression (%) 14.6 2.248 1.600–3.160
(ESRD) and its treatments are functionally debilitat-
a
Values presented are: mean  SD or percentage. ing, affecting social relationships and activities of daily
b
RR per unit increase for continuous variable. living [24]. Discrepancy in social support expectations
c
High SGA score indicates better nutritional status (6–7: well between patients and their family and friends results if
nourished,
5: malnourished). patients hope to minimize lifestyle changes within the
restrictions of dialysis whilst their support network
The social support interaction subscales were posi- might be unaware or unsure of how to cope with the
patients’ treatment and dietary needs [25]. Our results
tively associated with each other, and negatively
suggest an increased mortality risk amongst patients
associated with the social support discrepancy
who perceive that they have insufficient supportive
subscales (Table 2). No correlations were found
interactions. Our results are consistent with that of
between the social support variables and clinical
Christensen et al. [7] who reported that higher
variables such as BMI, serum albumin, and Kt/V. perceived family support was associated with lower
Indication of depression was negatively correlated mortality in HD patients.
with social companionship (interaction) and daily That social companionship is important to our
emotional support (interaction), and positively asso- sample is consistent with previous research of dialysis
ciated with all three of the social support discrepancy patients using different cohorts, or in patients with
variables. other chronic illnesses [9,26,27]. Feeling socially
Table 3 shows the hazard estimates between isolated can induce stress and anxiety, which in turn
social support and mortality for the whole sample. can produce physiological changes, such as a compro-
The adjusted hazard ratios suggest there were no mised immune system [28], which if prolonged, could
significant associations between any of the three lead to higher morbidity and mortality [29].
aspects of social support (interactions) and survival. Perceiving inadequacy in daily emotional support or
The association between discrepancy in social shows of affection was associated with higher mortality
support and mortality suggests that patients who in our sample. This finding again suggests that in view
perceived receiving insufficient social support have an of the tremendous changes brought on by dialysis,
increased mortality risk (Table 3). A 1-point adjusted patients might develop feelings of guilt and of being a
increase in the discrepancy score for social companion- burden to family and loved ones [24]. This in turn
ship, daily emotional support and total support was could increase patients’ need for shows of affection and
associated with a 6%, 10% and 2% increase in acceptance from their support network.
mortality risk, respectively. The risk associated with Both receiving and perceiving having inadequate
discrepancy in emotional support with problems was emotional support with problems were not associated
reduced to non-significance following adjustments. with mortality in our study. Although receiving
845 M. S. Y. Thong et al.
Table 2. Pearson correlations between social support variables, depression indicator and clinical variables

SC-I ES-I DS-I TS-I SC-D ES-D DS-D TS-D DEP Age KI rGFR BMI ALB

ES-I 0.67
DS-I 0.69 0.74
TS-I 0.86 0.94 0.87
SC-D 0.64 0.38 0.48 0.53
ES-D 0.54 0.56 0.57 0.62 0.71
DS-D 0.54 0.51 0.63 0.61 0.70 0.83
TS-D 0.62 0.54 0.61 0.64 0.86 0.95 0.91
DEP 0.20 NS 0.15 NS 0.38 0.24 0.30 0.32
Age NS NS NS NS NS NS NS NS 0.12
KI 0.11 NS NS NS 0.19 NS NS 0.10 0.29 0.31
rGFR NS 0.11 NS NS NS NS NS NS NS NS 0.23
BMI NS NS NS NS NS NS NS NS NS NS NS NS
ALB NS NS NS NS NS NS NS NS NS 0.27 0.18 0.17 NS
Kt/V NS NS NS NS NS NS NS NS NS 0.19 NS 0.33 0.14 NS

SC-I, social companionship-interactions; ES-I, emotional support with problem-interaction; DS-I, daily emotional support-interactions; TS-

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I, total support-interactions; SC-D, social companionship-discrepancies; ES-D, emotional support with problem-discrepancie; DS-D, daily
emotional support-discrepancies; TS-D, total support-discrepancies; DEP, indicator of depression; KI, Karnofsky Index; rGFR, residual
renal function; BMI, body mass index; ALB, serum albumin; Kt/V, renal urea clearance;
All correlations shown were P < 0.05; NS, non-significant.

Table 3. RR of aspects of social support on all-cause mortality from baseline to end of follow-up

Type of social support Mean  SD Risk estimate

Crude Adjusteda

RRb 95% CI RRb 95% CI

Interaction
Social companionship (range: 5–20) 11.74  3.23 0.949* 0.906–0.994 0.972 0.924–1.023
Daily emotional support (range: 4–16) 10.30  2.65 0.988 0.935–1.044 0.984 0.926–1.047
Emotional support with problems (range: 8–32) 19.74  5.42 1.016 0.988–1.044 1.005 0.976–1.036
Total support (range: 17–68) 41.78  10.19 0.988 0.984–1.013 0.998 0.982–1.014
Discrepancy (Perceiving that not enough social support is received)
Social companionship (range: 5–15) 7.26  2.50 1.113* 1.055–1.174 1.068* 1.004–1.135
Daily emotional support (range: 4–12) 5.55  2.06 1.093* 1.023–1.168 1.098* 1.020–1.183
Emotional support with problems (range: 8–24) 10.98  4.04 1.042* 1.007–1.078 1.033 0.997–1.071
Total support (range: 17–51) 23.79  7.89 1.028* 1.010–1.045 1.022* 1.003–1.042

*P < 0.05.
a
Adjusted for age, gender, education, marital status, Davies comorbidity score, serum albumin, functional ability, depression symptoms and
treatment modality.
b
RR per unit increase.

encouragement and advice from one’s social support
network can facilitate lifestyle change, it can also
interfere. It interferes when the instances of support
were deemed non-supportive by the patient despite the
provider’s best intentions, and could signify the failure
of the provider to understand the patient’s needs [30].
Patients might consider encouragement and advice
giving as undesired criticism or control by their loved
ones [31]. Viewed in this context, our patients might
consider that being told to persevere in their illness,
advice giving, or being given a nudge in the right
direction, as being unhelpful or even a source of
conflict.
We found no significant differences between HD and
PD patients in the frequency of supportive interactions
received and mortality. However, HD patients
perceived receiving less sufficiency of daily emotional
support compared with PD patients. This is of interest
as it could be again related to the point discussed above
regarding feelings of guilt and burden associated with
dialysis. Compared with PD, patients on HD might
require more help with transportation, financial
support and home management [32].
This study does have limitations. Social support
needs can be dynamic [33]. We measured social support
once at baseline whilst the follow-up period could be
up to 6 years. Thus, our data might reflect the needs of
patients at the early stages of dialysis and may not be
representative over time.
Previous research suggests that depression is sig-
nificantly associated with mortality in dialysis patients
[34,35]. Depression was also found to be associated
Social support and survival
with lower levels of perceived social support in HD
patients [36]. In our study, depression indicators were
significantly associated with mortality, and were
included in our model for adjustment. However, the
association between social support and mortality
remained similar when we excluded depression indica-
tors from the model (results not shown). This suggests
that possible depression is not an important factor in
our study.
Understanding that patients on dialysis require
different types of social support has important clinical
implications. Clinical care providers could tailor
intervention programmes to improve social support
based on patients’ needs, such as recommendations to
appropriate programmes like self-help groups [37] or
psycho-educational programmes [38–41] designed to
promote self-efficacy in coping with dialysis. Besides
providing relevant medical information regarding life-
style changes due to dialysis, clinical care providers
should also highlight to patients and family/caregivers
the relational dynamics involved in lifestyle changes
[31]. Patients and their family/caregivers could be made
aware of potential conflicts that could arise when
communicating encouragement and support for
lifestyle change.
ESRD patients undergoing dialysis could require
different types of social support depending on
their social environment and the severity of the
illness. Future studies could provide a longitudinal
assessment with several points of data collection
to chart for possible changes in social support needs
since the start of dialysis and its association with
survival.
In conclusion, this study suggests that patients’
perception regarding the adequacy of their social
support is an independent predictor of mortality.
Different aspects of social support have varying levels
of importance to the patients. To improve the long-
term outcome of dialysis patients, efforts to prepare
patients psychologically for the demands of dialysis
treatment should be an integral part of their
clinical care.
Acknowledgements. We thank the nursing staff of the partici-
pating dialysis centres and the staff of the NECOSAD trial office
fo their invaluable assistance in the collection and management of
data for this study. This work was supported in part by
unrestricted grants from Baxter Healthcare and the Dutch Kidney
Foundation.
The Netherlands Cooperative Study on the Adequacy of Dialysis
(NECOSAD) Study Group: A. J. Apperloo, J. A. Bijlsma,
M. Boekhout, W. H. Boer, P. J. M. van der Boog, H. R. Büller,
M. van Buren, F. Th. de Charro, C. J. Doorenbos, M. A. van den
Dorpel, A. van Es, W. J. Fagel, G. W. Feith, C. W. H. de Fijter,
L. A. M. Frenken, W. Grave, J. A. C. A. van Geelen,
P. G. G. Gerlag, J. P. M. C. Gorgels, R. M. Huisman, K. J. Jager,
K. Jie, W. A. H. Koning-Mulder, M. I. Koolen, T. K. Kremer
Hovinga, A. T. J. Lavrijssen, A. J. Luik, J. van der Meulen,
K. J. Parlevliet, M. H. M. Raasveld, F. M. van der Sande,
M. J. M. Schonck, M. M. J. Schuurmans, C. E. H. Siegert,
C. A. Stegeman, P. Stevens, J. G. P. Thijssen, R. M. Valentijn,
G. H. Vastenburg, C. A. Verburgh, H. H. Vincent, P. F. Vos.
845
Conflict of interest statement. None declared.
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Received for publication: 26.6.06

Accepted in revised form: 27.10.06

Appendix 1. Items in the Social Support List (SSL) subscales

Scale Item (Does it ever happen to you that people*. . ..)

Social companionship – ask you to join in?

– just call you up or just chat to you?
– drop in for a (pleasant) visit?
– go shopping, to the movies or sports matches, or just go out for a day with you?
– invite you to a party or to dinner?
Daily emotional support – are affectionate towards you?
– cuddle/hug you?
– lend you a friendly ear?
– show that they are fond of you?
Emotional support with problems – stand by you?
– perk you up or cheer you up?
– give you a nudge in the right direction
– give you good advice
– tell you to persevere?
– comfort you?
– help you to clarify your problems?
– reassure you?

*‘people’ refers to all the people the patient associates with, such as family, friends, acquaintances, neighbours, colleagues, etc.